Art & science dementia series: 11
The PEARL programme: caring for adults living with dementia Baker CJ (2015) The PEARL programme: caring for adults living with dementia. Nursing Standard. 30, 5, 46-51. Date of submission: June 30 2014; date of acceptance: August 28 2014.
Abstract Caring for people living with dementia in care homes requires training in best dementia care practice and person-centred care. This article describes the main interventions and processes that have been adopted by Four Seasons Health Care, an independent provider of residential care homes and care homes with nursing in the UK, to develop its homes into centres of excellence for dementia care. It provides an overview of the PEARL (Positively Enriching And enhancing Residents Lives) programme, which has been found to reduce antipsychotic medication use, depression scores and pain, and improve patient wellbeing.
Author Caroline Jane Baker Director of dementia care, Barchester Healthcare, Chelsea, London (at the time of writing was director of dementia care, Four Seasons Health Care, Codsall, Staffordshire) . Correspondence to: [email protected]
Keywords best practice, care homes, dementia care, older people, PEARL programme, person-centred care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: journals.rcni.com/r/author-guidelines
THERE ARE APPROXIMATELY 800,000 people living with dementia in the UK, and this number is predicted to rise to 1 million by 2025 (Alzheimer’s Society 2014). Of the total number of people living with dementia, two thirds reside in the community, while one third live in care homes (Alzheimer’s Society 2014). In the UK, an estimated 80% of people living in care homes have a diagnosis of dementia or significant memory problems (Quince 2013). Four Seasons Health Care (FSHC) is an independent provider of residential care homes and 46 september 30 :: vol 30 no 5 :: 2015
care homes with nursing in the UK. Within the organisation, there are 20,000 residents in 450 care homes. Approximately 6,700 residents have a diagnosis of dementia and reside within 250 of the care homes. However, this figure may be an underestimate because approximately 37% of people living with dementia in the UK have not received a formal diagnosis of their condition (Alzheimer’s Society 2015) and, therefore, may reside in general care nursing homes. With increased awareness of dementia through programmes such as Dementia Friends (Alzheimer’s Society 2013a), Living Well With Dementia: A National Dementia Strategy (Department of Health 2009) and the Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015 (Department of Health 2012), it is expected that the number of people diagnosed with dementia will increase over the next few years (Alzheimer’s Society 2015). In 2008, FSHC piloted the PEARL programme, an accreditation scheme to promote positive practice across its dementia care homes (FSHC 2013). The term PEARL is an acronym for the programme’s mission – Positively Enriching And enhancing Residents Lives. The term is also derived from the concept of the hidden ‘pearl’ within, as described by Christine Bryden, who was diagnosed with dementia when she was 46: ‘We need to find the pearl hidden within us. Like the pearl that is formed through the irritation of a grain of sand within an oyster, our pearl has formed through the challenge of living with dementia. Finding the pearl within is the key to creating a new future of life in the slow lane’ (Bryden 2005). Initially, the programme was based on 100 evidence and research-based criteria to help care homes develop into centres of excellence for people living with dementia. However, the organisation then worked with Professor Dawn Brooker, director of the University of Worcester Association for Dementia Studies, and amalgamated the VIPS model (Brooker 2006) into the PEARL programme. The principles of the VIPS model are: Valuing people living with dementia and those who care for them.
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Treating people as Individuals. Looking at the world from the Perspective of the person living with dementia. A positive Social environment in which the person living with dementia can experience relative wellbeing. There are now 158 criteria that are incorporated into FSHC’s Dementia Care Manual. Each of the criteria is measured from 0 (no evidence of this happening at all) to 5 (excellent and happening all of the time). At the beginning of the programme, many of the care homes had not exceeded 30% in score 5 on their baseline assessment. The criteria focus on aspects of care that have proven outcomes, either from research evidence or through clinical practice experience, such as using reminiscence therapy (Subramaniam and Woods 2012, Testad et al 2014), doll therapy (Mitchell and O’Donnell 2013, Braden and Gaspar 2014, Mitchell et al 2014) or making sure the care home managers are positive in their approach to dementia care and listen to their staff’s ideas for change (Castle and Decker 2011, Lundgren et al 2015). The programme emphasises the need for care staff to work proactively to ensure that distress is minimised and antipsychotic medication use is reduced (FSHC 2013). For example, if residents are distressed during personal care, they are assessed to see whether they may actually be in pain. If that is deemed to be the case, pain medication is administered and the effects assessed, rather than assuming that the person requires antipsychotic medication. The care homes receive guidance, support and bespoke training throughout the project to help them achieve successful PEARL accreditation, which is awarded following an unannounced validation visit by members of an internal team of dementia care project managers (FSHC 2013). The validation process takes place over one day or two days. Each member of the team takes responsibility for carrying out a dementia care map (an observational tool that looks at the care of people living with dementia from the viewpoint of the person with dementia) (Brooker and Surr 2005), interviewing residents, relatives and staff, and auditing the paperwork or undertaking general observations within the building. The team then meets at the end of the validation process to make a decision regarding the overall score, which is based on strict validation guidelines. Following the validation, care homes are supported to continue to develop their services so that they can achieve successful revalidation – the revalidation exercise occurs after one or two years. At the time of submission of this article, 75 care homes had been awarded PEARL status, with a further 70 care homes on the programme.
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The programme takes approximately 12 months to implement. It has been found to have good outcomes for residents, including an average 50% reduction in antipsychotic medication use as staff become more aware of person-centred care, and proactive and analytical assessment (FSHC 2013). This article outlines some of the main interventions in the PEARL programme that have helped practitioners to improve care provision for people living with dementia in the care home setting.
Person-centred care Person-centred care is a term that is used within various mission statements, government publications and advisory leaflets, and seems to have replaced ‘individualised care’ with reference to best practice in dementia care (Baker 2015). Person-centred care aims to help carers of people living with dementia recognise the individual behind the disease and understand that these individuals have unique personalities and life experiences (Kitwood 1997). For carers to deliver person-centred care they need to be aware of the plethora of information about the person for whom they are caring and, perhaps more importantly, know how to use that information to assist and enable the resident to maintain or improve wellbeing (Kitwood 1997). The starting point in the PEARL programme in terms of delivering person-centred care, is to respect colleagues and their needs. Staff will be unable to deliver empathic, compassionate care if they feel unsupported or undervalued within their role (Brooker 2006). In addition, if a care organisation is to deliver person-centred care in anything other than a non-trivial manner, the rights of all people, regardless of age and cognitive ability, have to be promoted from the top downwards (Brooker 2006). How staff relate to the person living with dementia has a significant effect on the course of the disease and in restoring personhood, and the feeling of being needed and valued (Bryden 2005). When FSHC first started to discuss developing person-centred approaches to care, staff believed that delivering such care would require more staff. In reality, and in the author’s experience, when person-centred care is adopted, as opposed to institutionalised care, fewer staff are needed since levels of distress in residents are reduced. Working with residents rather than against their choices and preferences, enables practitioners to carry out care with compassion. In addition, if the resident is comfortable with the approach to care adopted, they are more likely to participate in a negotiated care intervention. However, if care staff are working to time constraints and pressures in an attempt to meet the demands of the care home, residents may september 30 :: vol 30 no 5 :: 2015 47
Art & science dementia series: 11 become distressed and anxious, particularly if they fail to understand what is going on or simply do not want the care intervention at that particular time. Therefore, although care staff may feel that working in a person-centred way will necessitate more staff or time, by minimising residents’ anxiety or fear, the time spent having to implement reactive measures to situations that may have been created by the actions of staff are reduced (Baker 2009, 2015).
Training and culture change The PEARL criteria are tools and measures. The process itself is the critical factor in the success of the PEARL programme, as well as the guidance and education provided to staff in relation to the rationale for each of the interventions within the programme (FSHC 2013). Training is essential to provide good dementia care (National Institute for Health and Care Excellence (NICE) 2006). Staff commence their PEARL education with an internal e-learning programme to help them understand the different types of dementia and the effect on residents in their care. They are then trained in small groups on how to deliver person-centred care. The training that appears to have the most significant effect on staff is a programme that the author developed in 2008 to enable staff to experience what it might feel like to live in a care home with a degree of dependence (Baker 2008). Staff consent to provide a brief life story and highlight their likes and dislikes, which are worked against in the morning session. For example, if a person prefers to drink coffee without milk, they will be given tea with milk and sugar. This technique enables staff to recognise the importance of respecting choice. Trainers also adopt aspects of malignant social psychology, which is a term used by Kitwood (1997) to describe the negative ways in which people, however unwittingly, can demoralise those living with dementia resulting in their social exclusion. For example, the trainers talk over the person, not referring to them by name, and use terms of endearment such as ‘sweetie’ or ‘love’. Following this training technique, staff reflected that it made them feel as if they were not a person in their own right. In the afternoon session, a member of staff is approached in a person-centred way, using information from their life story, and is encouraged to engage in an activity. The pilot of the training programme showed that staff found it difficult to engage in the afternoon session because they had become withdrawn following the morning session (Baker 2008). Of all the training provided, this is the experience that appears to remain vividly 48 september 30 :: vol 30 no 5 :: 2015
in people’s minds and helps them to become self-reflective in terms of their practice. Within the organisation, 500 staff members have also been trained in the use of Dementia Care Mapping (DCM) (Brooker and Surr 2005). DCM is only used in public areas of the care environment, such as lounges or dining rooms, and usually involves one or two trained ‘mappers’ who observe what happens to residents over the course of a typical day. DCM helps to identify how residents are experiencing their care and how care plans need to be adapted to improve residents’ overall level of wellbeing. For example, over a period of three to six hours a number of residents are observed to establish what type of activity they are engaged in and how they are experiencing that particular activity in relation to their mood or level of engagement. The mapper also notes any interactions that are carried out by staff and the effect that they may have on the resident. DCM can be helpful when providing staff training, since it can show how certain aspects of care could be approached differently.
Life story work Obtaining and working with aspects of residents’ life stories can be a crucial element of providing excellent person-centred care (NICE 2006). If it is known what makes the resident happy or unhappy, practitioners can become more proactive in the care they provide and use positive memories to increase wellbeing. They can also support the resident when recalling memories from the past, which are often present even when short-term memory begins to decline (Feil and de Klerk-Rubin 1992). Helping the person to remain ‘who they are’ and all that they have stood for, in other words, respecting their personhood, is essential in supporting wellbeing (Kitwood 1997). For some, it may be recognising their need to wake early because their former occupation was that of, for example, a postman, rather than trying to get them back to bed because it is deemed too early for them to get up, or understanding why a woman who used to be a head teacher is trying to get all the residents to sit down. For others, it may be as simple as knowing that the resident likes to have her nails painted red because she has always had them red and told her husband that it gave her increased confidence. These are small but important details that may help residents maintain their wellbeing. Working in collaboration with residents to help them maintain their uniqueness, their roles in life and their personhood is the starting point of negotiated care.
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Activity and engagement Activity is not always high on the agenda for some residents living with dementia, but the need for engagement is essential. Activity means different things to different people but is often perceived as being ‘active’ in terms of ‘doing’. However, in the author’s experience, engagement in dementia care can be more productive in terms of maintaining residents’ wellbeing than encouraging them to be involved in specific activities. For example, a resident may be sitting and watching others participating in some form of activity and, although they are not actually participating in the activity, they are engaged (or absorbed) in what they are seeing. As people walk by, they may not see the resident’s engagement, but when they take time out to observe, they may recognise that the resident is gaining as much enjoyment from watching as others are from taking part. It is important to establish what residents enjoy participating in, if anything at all, or with what they would like to be engaged in. Some residents may prefer to be on their own and are happy watching others, providing that practitioners check with them that they are fine. If residents have always been quite introverted or have isolated themselves socially throughout their lives, this aspect of their personality is not likely to change just because they have moved into a care home. At FSHC, residents are offered group activities. However, it has been found that it is equally important to assist residents to become part of everyday care home life and to foster and encourage participation in daily routines. These could include laying the tables or helping to fold the towels, since such activities can help residents achieve a sense of purpose and role continuity. Within each communal room, it can be helpful to have accessible activities that the resident can carry out independently, demonstrating choice on the resident’s part. Examples of such activities include providing books and magazines, a small pile of napkins that need folding or ‘rummage’ boxes containing items that residents can look at or with which they can engage. The care homes within the FSHC group have also scattered empathy dolls throughout the home because it has been found that residents enjoy caring for, or simply gain comfort from holding such dolls, and this results in reduced distress (Baker 2009). Dolls are offered as a structured activity for some residents and their use is included within the individual’s care plan. For example, some residents choose to take their empathy doll to the dinner table or place the doll in a pram and walk around the care home. When the dolls have been placed around the care home, residents have often been observed to collect one and engage with it independently.
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There have been a small number of studies that have provided subjective narrative accounts of the positive effect of empathy dolls (Mitchell and O’Donnell 2013, Braden and Gaspar 2014, Mitchell et al 2014). However, there are no validated outcome measures or rigorous narrative interview procedures in relation to the use of empathy dolls in dementia care (Mitchell and O’Donnell 2013). In the author’s clinical experience, empathy dolls can produce some significant moments. For example, the author observed a woman who had four children as she carried four dolls around with her and shared her cup of tea and biscuits with them.
Making the most of mealtimes The PEARL programme also focuses on increasing nutritional intake for residents. The programme has demonstrated that a diagnosis of dementia does not correlate necessarily with a reduction in weight. In fact, in the latest evaluation, on average 42% of the residents on the programme had gained weight (FSHC 2013). Many of the care homes have been creative in their thinking around mealtimes. Some care homes have two meal sittings. This helps create a more relaxed pace to the meal because there are fewer residents in the dining area, which allows staff to provide more individual interactions. Others have changed their meal times so that the main meal is served in the evening rather than at lunchtime. This is because many of the residents ate their main meal in the evening when they lived at home. Other care homes have introduced buffet-style brunches so that residents can snack throughout the morning into lunchtime. Staff have also been encouraged to assess the residents in relation to the need for adaptive crockery or cutlery and to purchase coloured crockery for those with visual difficulties so that there is a contrast between the food and the plate (Alzheimer’s Society 2013b). However, maintaining the essential focus on residents’ individual preferences can be central to unlocking the reasons for a reduced appetite (Alzheimer’s Society 2013b). People’s food preferences can change, even on a daily basis. Visual representation of the meal choices on offer can be helpful, allowing the resident to see and smell the variety of food. Staff can present both plated choices of meal to residents to enable them to select which they would prefer.
Medication and distress A resident may be admitted to a care home from an acute general hospital with a prescribed antipsychotic medication, possibly because they experienced acute delirium while they were september 30 :: vol 30 no 5 :: 2015 49
Art & science dementia series: 11 being treated for their physical condition. In the past, care home staff often did not question the prescription and continued to ask the resident’s GP to prescribe it – along with their other prescribed medications – because it was assumed that it was required. In other cases, antipsychotic medication may have been prescribed for a transient period of distress but, because the person had ‘settled’, the prescription continued without review. It has been found that behavioural and psychological symptoms of many people living with dementia are managed with antipsychotic medication (Alzheimer’s Society 2009, Banerjee 2009). However, the use of antipsychotic medication in older people living with dementia can lead to serious and life-threatening side effects such as increased confusion and risk of falls (NICE 2006). Some relatives of people living with dementia can be anxious if the dose of antipsychotic medication is reduced or the drug is discontinued, fearing that the individual will return to a pre-medication state of ill-being. However, the majority of relatives have been pleasantly surprised that the resident is often experiencing enhanced wellbeing when the medication is reduced or discontinued. During the initial pilot phase of the programme, there was an average 52% reduction in the use of antipsychotic medication across the eight care homes that were evaluated, with a 48% reduction in a later evaluation (FSHC 2013). A relative from one care home in the pilot study commented: ‘In a matter of weeks at the home he was up and about. On the next visit we sat in the lounge eating breakfast together and he is much more aware and alert. The only medication he is on now is blood pressure tablets. It is remarkable.’ In this particular care home, 90% of residents were taking at least one prescribed antipsychotic medication at the start of the programme.
A proactive approach Dementia care involves a certain amount of investigative work because of the difficulties some people living with dementia may have in being able to articulate clearly what is troubling them. As practitioners become more person-centred and focus on residents’ life stories, more assumptions can be made about the needs of residents if they are unable to voice these for themselves. For example, it may be known that one resident generally becomes sleepy after lunch but their sleep is disrupted if they remain in their chair and they look uncomfortable. Therefore, the care plan for this resident should be that they rest on their bed for an hour after lunch. However, there are times when a resident may become distressed for no apparent reason. This should lead immediately to a series of 50 september 30 :: vol 30 no 5 :: 2015
questions and observations (Box 1). The first few questions in Box 1 focus on the resident and can be supported by the use of observational tools such as the Abbey Pain Scale (Abbey et al 2004), the Cornell Scale for Depression in Dementia (Alexopoulos et al 1988) and DCM (Brooker and Surr 2005). The questions that then need to be asked include: What do the findings tell us? Have the findings changed from the last evaluation? Have colleagues also noticed a change? Do we need to speak to the GP to see if analgesia or an antidepressant should be commenced? The last two questions in Box 1 challenge practitioners to ask the following questions: Is the resident’s distress a direct result of our ineffective communication or our approach to the intervention? Is there a way that we can reframe our communication to make it easier for the resident to understand and to respond? Have we, as practitioners, reflected on our own sense of self-awareness and are we willing to listen to colleagues and take on board well-intended constructive criticism to help us to change and become expert practitioners in dementia care? The danger is that staff may continue to believe that they adopt the right approach because they have always done something a certain way, with positive results for some residents but not all. However, residents’ attitudes, likes and dislikes can change, which may require modification to a particular approach to care. Also, a radical change in behaviour may indicate an underlying issue that the resident is unable to express.
Involvement of relatives and friends For some relatives, moving a loved one into a care home can be a traumatic experience, particularly if they have lived with the person for many years and thus feel a significant sense of loss and helplessness. This may also manifest in feelings of failure in terms of letting their loved one down because they can no
BOX 1 Essential questions and observations if a resident appears distressed for no apparent reason Is the resident in pain? Is the resident hungry or thirsty? Does the resident need to use the toilet? Does the resident have an infection? Is the resident depressed? Is there something worrying the resident? Did I ask permission or involve the resident? Did I communicate what I was about to do?
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longer care for them at home. For others, the move into a care home may be associated with a sense of relief, particularly if the demands of being a carer have left them tired and perhaps even resentful towards their loved one (Alzheimer’s Society 2012). Person-centred care also involves supporting the relatives and loved ones of residents living with dementia (Kitwood 1997, NICE 2006). It is important that practitioners recognise how these individuals feel about their loved one’s admission to the care home and whether they wish to continue to be involved in the resident’s care or if they want the care home to be the sole provider of care. Practitioners must not judge the relative or loved one, whichever stance they take. The wish of relatives to be involved does not mean they want to interfere or that they do not trust the care home staff. Instead it may help them to fulfil their own need of continuing to care as much as they can for the person they love.
Conclusion Caring for people living with dementia in the care home setting is a continual learning process and training in best practice is essential. It is important that care home staff observe and listen to residents living with dementia and take time to reflect on how, by approaching things differently, they can improve the lives of residents. The PEARL programme emphasises the importance of the resident’s life story when providing person-centred care. It is impossible to know if things are being done well if it is not known how care should be carried out in the first place NS Acknowledgement Nursing Standard wishes to thank Karen Harrison Dening, director of Admiral Nursing, Dementia UK, for co-ordinating and developing the Dementia series.
References Abbey J, Piller N, De Bellis A, Esterman A, Parker D, Giles L, Lowcay B (2004) The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia. International Journal of Palliative Nursing. 10, 1, 6-13. Alexopoulos GS, Abrams RC, Young RC, Shamoian CA (1988) Cornell Scale for Depression in Dementia. Biological Psychiatry. 23, 3, 271-84. Alzheimer’s Society (2009) Counting the Cost: Caring for People with Dementia on Hospital Wards. Alzheimer’s Society, London. Alzheimer’s Society (2012) Dealing with Guilt. Alzheimer’s Society, London. Alzheimer’s Society (2013a) Dementia Friends. Alzheimer’s Society, London. Alzheimer’s Society (2013b) Eating and Drinking. Alzheimer’s Society, London. Alzheimer’s Society (2014) Statistics. Alzheimer’s Society, London. Alzheimer’s Society (2015) Right to Know Campaign — Diagnosis and Support. Alzheimer’s Society, London. Baker C (2008) The power of learning through experience. Journal of Dementia Care. 16, 4, 27-29.
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Baker C (2009) Introducing PEARL: rewarding good practice in dementia care. Journal of Dementia Care. 17, 4, 31-33.
Department of Health (2009) Living Well With Dementia: A National Dementia Strategy. Department of Health, London.
Baker C (2015) Developing Excellent Care for People Living with Dementia in Care Homes. Jessica Kingsley Publishers, London.
Department of Health (2012) Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015. Department of Health, London.
Banerjee S (2009) The Use of Antipsychotic Medication for People with Dementia: Time for Action. Department of Health, London. Braden BA, Gaspar PM (2014) Implementation of a baby doll therapy protocol for people with dementia (innovative practice). Dementia November 27, pii: 1471301214561532 [Epub ahead of print]. Brooker D (2006) Person-Centred Dementia Care: Making Services Better. Jessica Kingsley Publishers, London. Brooker D, Surr C (2005) Dementia Care Mapping: Principles and Practice. Bradford Dementia Group, Bradford.
Mitchell G, McCormack B, McCance T (2014) Therapeutic use of dolls for people living with dementia: a critical review of the literature. Dementia August 25, pii: 1471301214548522 [Epub ahead of print].
Feil N, de Klerk-Rubin V (1992) V/F Validation The Feil Method How to Help Disorientated Old-Old. Edward Feil Productions, Jasper, OR.
National Institute for Health and Care Excellence (2006) Dementia: Supporting People with Dementia and Their Carers in Health and Social Care. Clinical Guideline No.42. NICE, London.
Four Seasons Health Care (2013) PEARL Specialised Dementia Service. Phase 2 Report. fshc.co.uk/ specific/pdf/fshc-pearl-dementiacare-report-2013.pdf (Last accessed: September 1 2015.)
Quince C (2013) Low Expectations: Attitudes on Choice, Care and Community for People Living with Dementia in Care Homes. Alzheimer’s Society, London.
Kitwood (1997) Dementia Reconsidered: the Person Comes First. Open University Press, Buckingham.
Subramaniam P, Woods B (2012) The impact of individual reminiscence therapy for people with dementia: systematic review. Expert Review of Neurotherapeutics. 12, 5, 545-555.
Bryden C (2005) Dancing with Dementia. Jessica Kingsley Publishers, London.
Lundgren D, Ernsth-Bravell M, Kåreholt I (2015) Leadership and the psychosocial work environment in old age care. International Journal of Older People Nursing. June 15, doi: 10.1111/opn.12088 [Epub ahead of print].
Castle NG, Decker FH (2011) Top management leadership style and quality of care in nursing homes. Gerontologist. 51, 5, 630-642.
Mitchell G, O’Donnell H (2013) The therapeutic use of doll therapy in dementia. British Journal of Nursing. 22, 6, 329-334.
Testad I, Corbett A, Aarsland D et al (2014) The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review. International Psychogeriatrics. 26, 7, 1083-1098.
september 30 :: vol 30 no 5 :: 2015 51
The PEARL programme: caring for adults living with dementia Baker CJ (2015) The PEARL programme: caring for adults living with dementia. Nursing Standard. 30, 5, 46-51. Date of submission: June 30 2014; date of acceptance: August 28 2014.
Abstract Caring for people living with dementia in care homes requires training in best dementia care practice and person-centred care. This article describes the main interventions and processes that have been adopted by Four Seasons Health Care, an independent provider of residential care homes and care homes with nursing in the UK, to develop its homes into centres of excellence for dementia care. It provides an overview of the PEARL (Positively Enriching And enhancing Residents Lives) programme, which has been found to reduce antipsychotic medication use, depression scores and pain, and improve patient wellbeing.
Author Caroline Jane Baker Director of dementia care, Barchester Healthcare, Chelsea, London (at the time of writing was director of dementia care, Four Seasons Health Care, Codsall, Staffordshire) . Correspondence to: [email protected]
Keywords best practice, care homes, dementia care, older people, PEARL programme, person-centred care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: journals.rcni.com/r/author-guidelines
THERE ARE APPROXIMATELY 800,000 people living with dementia in the UK, and this number is predicted to rise to 1 million by 2025 (Alzheimer’s Society 2014). Of the total number of people living with dementia, two thirds reside in the community, while one third live in care homes (Alzheimer’s Society 2014). In the UK, an estimated 80% of people living in care homes have a diagnosis of dementia or significant memory problems (Quince 2013). Four Seasons Health Care (FSHC) is an independent provider of residential care homes and 46 september 30 :: vol 30 no 5 :: 2015
care homes with nursing in the UK. Within the organisation, there are 20,000 residents in 450 care homes. Approximately 6,700 residents have a diagnosis of dementia and reside within 250 of the care homes. However, this figure may be an underestimate because approximately 37% of people living with dementia in the UK have not received a formal diagnosis of their condition (Alzheimer’s Society 2015) and, therefore, may reside in general care nursing homes. With increased awareness of dementia through programmes such as Dementia Friends (Alzheimer’s Society 2013a), Living Well With Dementia: A National Dementia Strategy (Department of Health 2009) and the Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015 (Department of Health 2012), it is expected that the number of people diagnosed with dementia will increase over the next few years (Alzheimer’s Society 2015). In 2008, FSHC piloted the PEARL programme, an accreditation scheme to promote positive practice across its dementia care homes (FSHC 2013). The term PEARL is an acronym for the programme’s mission – Positively Enriching And enhancing Residents Lives. The term is also derived from the concept of the hidden ‘pearl’ within, as described by Christine Bryden, who was diagnosed with dementia when she was 46: ‘We need to find the pearl hidden within us. Like the pearl that is formed through the irritation of a grain of sand within an oyster, our pearl has formed through the challenge of living with dementia. Finding the pearl within is the key to creating a new future of life in the slow lane’ (Bryden 2005). Initially, the programme was based on 100 evidence and research-based criteria to help care homes develop into centres of excellence for people living with dementia. However, the organisation then worked with Professor Dawn Brooker, director of the University of Worcester Association for Dementia Studies, and amalgamated the VIPS model (Brooker 2006) into the PEARL programme. The principles of the VIPS model are: Valuing people living with dementia and those who care for them.
NURSING STANDARD
Treating people as Individuals. Looking at the world from the Perspective of the person living with dementia. A positive Social environment in which the person living with dementia can experience relative wellbeing. There are now 158 criteria that are incorporated into FSHC’s Dementia Care Manual. Each of the criteria is measured from 0 (no evidence of this happening at all) to 5 (excellent and happening all of the time). At the beginning of the programme, many of the care homes had not exceeded 30% in score 5 on their baseline assessment. The criteria focus on aspects of care that have proven outcomes, either from research evidence or through clinical practice experience, such as using reminiscence therapy (Subramaniam and Woods 2012, Testad et al 2014), doll therapy (Mitchell and O’Donnell 2013, Braden and Gaspar 2014, Mitchell et al 2014) or making sure the care home managers are positive in their approach to dementia care and listen to their staff’s ideas for change (Castle and Decker 2011, Lundgren et al 2015). The programme emphasises the need for care staff to work proactively to ensure that distress is minimised and antipsychotic medication use is reduced (FSHC 2013). For example, if residents are distressed during personal care, they are assessed to see whether they may actually be in pain. If that is deemed to be the case, pain medication is administered and the effects assessed, rather than assuming that the person requires antipsychotic medication. The care homes receive guidance, support and bespoke training throughout the project to help them achieve successful PEARL accreditation, which is awarded following an unannounced validation visit by members of an internal team of dementia care project managers (FSHC 2013). The validation process takes place over one day or two days. Each member of the team takes responsibility for carrying out a dementia care map (an observational tool that looks at the care of people living with dementia from the viewpoint of the person with dementia) (Brooker and Surr 2005), interviewing residents, relatives and staff, and auditing the paperwork or undertaking general observations within the building. The team then meets at the end of the validation process to make a decision regarding the overall score, which is based on strict validation guidelines. Following the validation, care homes are supported to continue to develop their services so that they can achieve successful revalidation – the revalidation exercise occurs after one or two years. At the time of submission of this article, 75 care homes had been awarded PEARL status, with a further 70 care homes on the programme.
NURSING STANDARD
The programme takes approximately 12 months to implement. It has been found to have good outcomes for residents, including an average 50% reduction in antipsychotic medication use as staff become more aware of person-centred care, and proactive and analytical assessment (FSHC 2013). This article outlines some of the main interventions in the PEARL programme that have helped practitioners to improve care provision for people living with dementia in the care home setting.
Person-centred care Person-centred care is a term that is used within various mission statements, government publications and advisory leaflets, and seems to have replaced ‘individualised care’ with reference to best practice in dementia care (Baker 2015). Person-centred care aims to help carers of people living with dementia recognise the individual behind the disease and understand that these individuals have unique personalities and life experiences (Kitwood 1997). For carers to deliver person-centred care they need to be aware of the plethora of information about the person for whom they are caring and, perhaps more importantly, know how to use that information to assist and enable the resident to maintain or improve wellbeing (Kitwood 1997). The starting point in the PEARL programme in terms of delivering person-centred care, is to respect colleagues and their needs. Staff will be unable to deliver empathic, compassionate care if they feel unsupported or undervalued within their role (Brooker 2006). In addition, if a care organisation is to deliver person-centred care in anything other than a non-trivial manner, the rights of all people, regardless of age and cognitive ability, have to be promoted from the top downwards (Brooker 2006). How staff relate to the person living with dementia has a significant effect on the course of the disease and in restoring personhood, and the feeling of being needed and valued (Bryden 2005). When FSHC first started to discuss developing person-centred approaches to care, staff believed that delivering such care would require more staff. In reality, and in the author’s experience, when person-centred care is adopted, as opposed to institutionalised care, fewer staff are needed since levels of distress in residents are reduced. Working with residents rather than against their choices and preferences, enables practitioners to carry out care with compassion. In addition, if the resident is comfortable with the approach to care adopted, they are more likely to participate in a negotiated care intervention. However, if care staff are working to time constraints and pressures in an attempt to meet the demands of the care home, residents may september 30 :: vol 30 no 5 :: 2015 47
Art & science dementia series: 11 become distressed and anxious, particularly if they fail to understand what is going on or simply do not want the care intervention at that particular time. Therefore, although care staff may feel that working in a person-centred way will necessitate more staff or time, by minimising residents’ anxiety or fear, the time spent having to implement reactive measures to situations that may have been created by the actions of staff are reduced (Baker 2009, 2015).
Training and culture change The PEARL criteria are tools and measures. The process itself is the critical factor in the success of the PEARL programme, as well as the guidance and education provided to staff in relation to the rationale for each of the interventions within the programme (FSHC 2013). Training is essential to provide good dementia care (National Institute for Health and Care Excellence (NICE) 2006). Staff commence their PEARL education with an internal e-learning programme to help them understand the different types of dementia and the effect on residents in their care. They are then trained in small groups on how to deliver person-centred care. The training that appears to have the most significant effect on staff is a programme that the author developed in 2008 to enable staff to experience what it might feel like to live in a care home with a degree of dependence (Baker 2008). Staff consent to provide a brief life story and highlight their likes and dislikes, which are worked against in the morning session. For example, if a person prefers to drink coffee without milk, they will be given tea with milk and sugar. This technique enables staff to recognise the importance of respecting choice. Trainers also adopt aspects of malignant social psychology, which is a term used by Kitwood (1997) to describe the negative ways in which people, however unwittingly, can demoralise those living with dementia resulting in their social exclusion. For example, the trainers talk over the person, not referring to them by name, and use terms of endearment such as ‘sweetie’ or ‘love’. Following this training technique, staff reflected that it made them feel as if they were not a person in their own right. In the afternoon session, a member of staff is approached in a person-centred way, using information from their life story, and is encouraged to engage in an activity. The pilot of the training programme showed that staff found it difficult to engage in the afternoon session because they had become withdrawn following the morning session (Baker 2008). Of all the training provided, this is the experience that appears to remain vividly 48 september 30 :: vol 30 no 5 :: 2015
in people’s minds and helps them to become self-reflective in terms of their practice. Within the organisation, 500 staff members have also been trained in the use of Dementia Care Mapping (DCM) (Brooker and Surr 2005). DCM is only used in public areas of the care environment, such as lounges or dining rooms, and usually involves one or two trained ‘mappers’ who observe what happens to residents over the course of a typical day. DCM helps to identify how residents are experiencing their care and how care plans need to be adapted to improve residents’ overall level of wellbeing. For example, over a period of three to six hours a number of residents are observed to establish what type of activity they are engaged in and how they are experiencing that particular activity in relation to their mood or level of engagement. The mapper also notes any interactions that are carried out by staff and the effect that they may have on the resident. DCM can be helpful when providing staff training, since it can show how certain aspects of care could be approached differently.
Life story work Obtaining and working with aspects of residents’ life stories can be a crucial element of providing excellent person-centred care (NICE 2006). If it is known what makes the resident happy or unhappy, practitioners can become more proactive in the care they provide and use positive memories to increase wellbeing. They can also support the resident when recalling memories from the past, which are often present even when short-term memory begins to decline (Feil and de Klerk-Rubin 1992). Helping the person to remain ‘who they are’ and all that they have stood for, in other words, respecting their personhood, is essential in supporting wellbeing (Kitwood 1997). For some, it may be recognising their need to wake early because their former occupation was that of, for example, a postman, rather than trying to get them back to bed because it is deemed too early for them to get up, or understanding why a woman who used to be a head teacher is trying to get all the residents to sit down. For others, it may be as simple as knowing that the resident likes to have her nails painted red because she has always had them red and told her husband that it gave her increased confidence. These are small but important details that may help residents maintain their wellbeing. Working in collaboration with residents to help them maintain their uniqueness, their roles in life and their personhood is the starting point of negotiated care.
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Activity and engagement Activity is not always high on the agenda for some residents living with dementia, but the need for engagement is essential. Activity means different things to different people but is often perceived as being ‘active’ in terms of ‘doing’. However, in the author’s experience, engagement in dementia care can be more productive in terms of maintaining residents’ wellbeing than encouraging them to be involved in specific activities. For example, a resident may be sitting and watching others participating in some form of activity and, although they are not actually participating in the activity, they are engaged (or absorbed) in what they are seeing. As people walk by, they may not see the resident’s engagement, but when they take time out to observe, they may recognise that the resident is gaining as much enjoyment from watching as others are from taking part. It is important to establish what residents enjoy participating in, if anything at all, or with what they would like to be engaged in. Some residents may prefer to be on their own and are happy watching others, providing that practitioners check with them that they are fine. If residents have always been quite introverted or have isolated themselves socially throughout their lives, this aspect of their personality is not likely to change just because they have moved into a care home. At FSHC, residents are offered group activities. However, it has been found that it is equally important to assist residents to become part of everyday care home life and to foster and encourage participation in daily routines. These could include laying the tables or helping to fold the towels, since such activities can help residents achieve a sense of purpose and role continuity. Within each communal room, it can be helpful to have accessible activities that the resident can carry out independently, demonstrating choice on the resident’s part. Examples of such activities include providing books and magazines, a small pile of napkins that need folding or ‘rummage’ boxes containing items that residents can look at or with which they can engage. The care homes within the FSHC group have also scattered empathy dolls throughout the home because it has been found that residents enjoy caring for, or simply gain comfort from holding such dolls, and this results in reduced distress (Baker 2009). Dolls are offered as a structured activity for some residents and their use is included within the individual’s care plan. For example, some residents choose to take their empathy doll to the dinner table or place the doll in a pram and walk around the care home. When the dolls have been placed around the care home, residents have often been observed to collect one and engage with it independently.
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There have been a small number of studies that have provided subjective narrative accounts of the positive effect of empathy dolls (Mitchell and O’Donnell 2013, Braden and Gaspar 2014, Mitchell et al 2014). However, there are no validated outcome measures or rigorous narrative interview procedures in relation to the use of empathy dolls in dementia care (Mitchell and O’Donnell 2013). In the author’s clinical experience, empathy dolls can produce some significant moments. For example, the author observed a woman who had four children as she carried four dolls around with her and shared her cup of tea and biscuits with them.
Making the most of mealtimes The PEARL programme also focuses on increasing nutritional intake for residents. The programme has demonstrated that a diagnosis of dementia does not correlate necessarily with a reduction in weight. In fact, in the latest evaluation, on average 42% of the residents on the programme had gained weight (FSHC 2013). Many of the care homes have been creative in their thinking around mealtimes. Some care homes have two meal sittings. This helps create a more relaxed pace to the meal because there are fewer residents in the dining area, which allows staff to provide more individual interactions. Others have changed their meal times so that the main meal is served in the evening rather than at lunchtime. This is because many of the residents ate their main meal in the evening when they lived at home. Other care homes have introduced buffet-style brunches so that residents can snack throughout the morning into lunchtime. Staff have also been encouraged to assess the residents in relation to the need for adaptive crockery or cutlery and to purchase coloured crockery for those with visual difficulties so that there is a contrast between the food and the plate (Alzheimer’s Society 2013b). However, maintaining the essential focus on residents’ individual preferences can be central to unlocking the reasons for a reduced appetite (Alzheimer’s Society 2013b). People’s food preferences can change, even on a daily basis. Visual representation of the meal choices on offer can be helpful, allowing the resident to see and smell the variety of food. Staff can present both plated choices of meal to residents to enable them to select which they would prefer.
Medication and distress A resident may be admitted to a care home from an acute general hospital with a prescribed antipsychotic medication, possibly because they experienced acute delirium while they were september 30 :: vol 30 no 5 :: 2015 49
Art & science dementia series: 11 being treated for their physical condition. In the past, care home staff often did not question the prescription and continued to ask the resident’s GP to prescribe it – along with their other prescribed medications – because it was assumed that it was required. In other cases, antipsychotic medication may have been prescribed for a transient period of distress but, because the person had ‘settled’, the prescription continued without review. It has been found that behavioural and psychological symptoms of many people living with dementia are managed with antipsychotic medication (Alzheimer’s Society 2009, Banerjee 2009). However, the use of antipsychotic medication in older people living with dementia can lead to serious and life-threatening side effects such as increased confusion and risk of falls (NICE 2006). Some relatives of people living with dementia can be anxious if the dose of antipsychotic medication is reduced or the drug is discontinued, fearing that the individual will return to a pre-medication state of ill-being. However, the majority of relatives have been pleasantly surprised that the resident is often experiencing enhanced wellbeing when the medication is reduced or discontinued. During the initial pilot phase of the programme, there was an average 52% reduction in the use of antipsychotic medication across the eight care homes that were evaluated, with a 48% reduction in a later evaluation (FSHC 2013). A relative from one care home in the pilot study commented: ‘In a matter of weeks at the home he was up and about. On the next visit we sat in the lounge eating breakfast together and he is much more aware and alert. The only medication he is on now is blood pressure tablets. It is remarkable.’ In this particular care home, 90% of residents were taking at least one prescribed antipsychotic medication at the start of the programme.
A proactive approach Dementia care involves a certain amount of investigative work because of the difficulties some people living with dementia may have in being able to articulate clearly what is troubling them. As practitioners become more person-centred and focus on residents’ life stories, more assumptions can be made about the needs of residents if they are unable to voice these for themselves. For example, it may be known that one resident generally becomes sleepy after lunch but their sleep is disrupted if they remain in their chair and they look uncomfortable. Therefore, the care plan for this resident should be that they rest on their bed for an hour after lunch. However, there are times when a resident may become distressed for no apparent reason. This should lead immediately to a series of 50 september 30 :: vol 30 no 5 :: 2015
questions and observations (Box 1). The first few questions in Box 1 focus on the resident and can be supported by the use of observational tools such as the Abbey Pain Scale (Abbey et al 2004), the Cornell Scale for Depression in Dementia (Alexopoulos et al 1988) and DCM (Brooker and Surr 2005). The questions that then need to be asked include: What do the findings tell us? Have the findings changed from the last evaluation? Have colleagues also noticed a change? Do we need to speak to the GP to see if analgesia or an antidepressant should be commenced? The last two questions in Box 1 challenge practitioners to ask the following questions: Is the resident’s distress a direct result of our ineffective communication or our approach to the intervention? Is there a way that we can reframe our communication to make it easier for the resident to understand and to respond? Have we, as practitioners, reflected on our own sense of self-awareness and are we willing to listen to colleagues and take on board well-intended constructive criticism to help us to change and become expert practitioners in dementia care? The danger is that staff may continue to believe that they adopt the right approach because they have always done something a certain way, with positive results for some residents but not all. However, residents’ attitudes, likes and dislikes can change, which may require modification to a particular approach to care. Also, a radical change in behaviour may indicate an underlying issue that the resident is unable to express.
Involvement of relatives and friends For some relatives, moving a loved one into a care home can be a traumatic experience, particularly if they have lived with the person for many years and thus feel a significant sense of loss and helplessness. This may also manifest in feelings of failure in terms of letting their loved one down because they can no
BOX 1 Essential questions and observations if a resident appears distressed for no apparent reason Is the resident in pain? Is the resident hungry or thirsty? Does the resident need to use the toilet? Does the resident have an infection? Is the resident depressed? Is there something worrying the resident? Did I ask permission or involve the resident? Did I communicate what I was about to do?
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longer care for them at home. For others, the move into a care home may be associated with a sense of relief, particularly if the demands of being a carer have left them tired and perhaps even resentful towards their loved one (Alzheimer’s Society 2012). Person-centred care also involves supporting the relatives and loved ones of residents living with dementia (Kitwood 1997, NICE 2006). It is important that practitioners recognise how these individuals feel about their loved one’s admission to the care home and whether they wish to continue to be involved in the resident’s care or if they want the care home to be the sole provider of care. Practitioners must not judge the relative or loved one, whichever stance they take. The wish of relatives to be involved does not mean they want to interfere or that they do not trust the care home staff. Instead it may help them to fulfil their own need of continuing to care as much as they can for the person they love.
Conclusion Caring for people living with dementia in the care home setting is a continual learning process and training in best practice is essential. It is important that care home staff observe and listen to residents living with dementia and take time to reflect on how, by approaching things differently, they can improve the lives of residents. The PEARL programme emphasises the importance of the resident’s life story when providing person-centred care. It is impossible to know if things are being done well if it is not known how care should be carried out in the first place NS Acknowledgement Nursing Standard wishes to thank Karen Harrison Dening, director of Admiral Nursing, Dementia UK, for co-ordinating and developing the Dementia series.
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